Hi I am 26.I have a high flow AVM on my tongue.I had emolization last year but i can stil l feel it like a pinching feeling sometimes.The doctors say I must have been born with it.I didnt realize it until a year and a half ago when I had some dental work done and I bit my tongue. It took them forever to figure out what it was.My surgery did not go so well.Two pieces of what they think was glue from the embolization broke off and went in my brain. After being in NICU they gave me heprin and there was no sign of stroke so I was able to go home the next day. The embolization was for the arterial part but the vein portion I didnt have anything done yet. Im so scared I have an appointment next week.I just feel scared that about it rupturing or me biting my tongue.Is there anyone else with this condition?I feel alone I dont know what I may be doing to make it worse, if I should just leave it alone because more surgery may be risky.
Justine, the best advice I can give you is to consult Dr. Suen. He successfully resected Deborah's tongue AVM; he also resected my son's eyebrow AVM. His email is ■■■■■■■■■■■■■■■■■■■
Send him some digital photos and a history, and he will get back to you. Leaving it alone when it has already been partly embolized would not be a good idea.
Some other members with tongue AVMs are Chelsa Minch's daughter Treasure and Sharon, who see Dr. Yakes; ConnieK's son and KRC52677, who have both consulted Dr. Suen; Salena Mariee, who sees Waner and Berenstein; Sarah T; and international members Bek, Steve Ruby Barrett, Patricia, RxK, and BillyJoe's friend.
You may also wish to join Extremity AVMs (http://www.avmsurvivors.org/group/extremityavms), where you can have a look at the Resource List for doctors who treat head and neck AVMs (http://www.avmsurvivors.org/group/extremityavms/forum/topics/resource-list-of-doctors-for-facial-head-and-neck-avms). You can also check out read Cindy's list of dos and don't for AVMs (http://www.avmsurvivors.org/profiles/blogs/precautions-what-to-do-and?xg_source=activity). Best wishes!
It may be that your current doctor will have to write a letter stating that your condition is beyond his expertise. If you friend ConnieK, she may be able to help you.
Justin, Please email/talk to your current doctors about getting a second opinion out of state and that you need their help in getting insurance coverage. Ask them to write you and the insurance a letter recommending help in treating your complex malformation. When you go for your next appointment, also bring it up. Its not that your current doctors are not knowledgeable but that AVMs are very complex and difficult to treat. They are best treated at a facility that sees these malformations often and more experienced. Maintain a good rapor with your current doctors as they will still be your advocate through this process and you will need to have a good relationship with them. Just remember to take one step at a time. Get a file together with copies of all of your records (procedures), scans and letters. Records you can get from Medical Records department from hospital, and scans from the radiology department. Let me know if you have any questions. I know this is overwhelming, just take one step at a time. The out of state coverage may take some time to get, unless the current doctors find a medical urgency to out a rush on it.
Thank you Connie for your help. My next doctor appt. is on Tuesday I will speak with my doctor. I think he is very experienced in AVMs but I may be his first patient with a tongue AVM.When its bothering me and I go to the hospital they never know what to do with it.Before they knew it was they were going to stick a needle in it to drain it! I gave up on going to the hospital.Im so scared and have so many questions about it. Can it just rupture, what if I bit my tongue, whats the pinching feeling is it growing, Im afraid if something happens and its an emergency will the doctors even know what to do? I have a five year old and Im a full time nursing student and I work.I just wish I didnt have to worry about if this thing is going to take my life.I dont know what to expect.I definately need to get a second opinion.
I hope your appointment went/goes well today! I am so glad the previous doctors didn't stick that needle in the AVM! Its crazy to run into such lack of knowledge when it comes to AVMs, but currently that is what we have to deal with until we figure out how to get the awareness out there.
Definately check with Dr Suen, sometimes he can remove very localized avms in one treatment/surgery. He is very skilled with avms! Well worth traveling to Arkansas.
I do not know exactly what is causing the feeling you are getting in your tongue. I imagine whrn blood supply is cut from an area, there much be some sensation to that area. Others who had previously emblolizations may be able to
Try not to focus on the AVM rupturing. And don't bite your tongue! Focus on getting your scans and opinions so you can have choices in treatment.
Hi Justine - I am a tongue AVM survivor. Yes, we are a very very very small group, but a strong one. I will pm you and we can exchange stories and offer my support. Hang in there and don't let them do any procedures on you. You must become your best medical advocate and that means finding the best AVM Doctor there is for the tongue. This is definitely Dr. Suen, who Dancermom mentioned earlier. Hang in there Justine.